Dr NOT wanting me to treat????

[eyehavegr8life]

I'm frustrated now! GREAT results but,Thought I should treat while I have less damage???I'm genotype 1, v/L 2,250,000copies 53/f HepC about 20-25yrs.I found out this past Dec(04)
My ast29/alt22 which are normal range.
My liver biopsy results IS:
Chronic Hepatitis, mild, without portal/periportal fibrosis.There is no stainable iron(Perls),no alpha-1-antitrypsin globules(dPAS)no copper-associated protien and no hepB surface antigen(Victoria blue)
mild 5% macrovesicular steatosis(fatty liver)with minimal zone 3 perivenular fibrosis, WITHOUT Mallory hyaline or steatohepatitis.
Tiny eosinophilic globules are present in one portal tract, etiology undetermined, possibly extruded immunoglobulin; there is NO evidence of amyloid.
Scheuer histologic score: portal/periportal grade 2, lobule grade 1 stage 0
My Hepatologist wants to see me in 2-3yrs with yearly liver function tests! He's top HepC doc at Cedars-Sinai...Wants me to wait for better treatment & Says,20 yrs to fibroisis without treatment. Hummm?? Comments Please, Annette

[ringeding]

HA HA GOOD ONE!!! made me laugh, thanks

.....well, as long as you don't look like 'bush' maybe no will suspect a thing!!!!

[jg2001]

I was looking at a picture of my brother today and I thought of yours...how is his progress?

I went to the Fingerhut Gallery in Sausalito on Saturday and met Grace Slick and even bought her "Inpsector Rabbit" piece.  I even have a photo of her kissing my hand!  Me!  MY HAND!  She is "one of us" with 7 years sober.  We are EVERYWHERE!

It's the little things that I hold close and cherish.

I hope all is well with you Chevy and that your garden is growing as it should be.  How many more weeks for you now?

Take care,

Jamie

[jg2001]

Well said Kimmy.  Unfortunately, that is the view of some.  Once a dope fiend, always a dope fiend.  

TB - I do not consider myself, nor the people I acquiant myself with in the NA/AA Fellowship, "dregs" of society or "scummy" dope fiends.  I consider us people who have lived life and have seen "both sides of the street"...nonetheless, we are people all the same.  To hear somebody who has not walked in our shoes or been to the places the drugs and alcohol have taken us, speak of "US" as less than or the ones who deserve to wait for the doctor for 2 hours because of who we are, strikes a nerve in me.  

Regardless of whether WHO has to wait 2 hours to see the doctor, it kinda seems to me that the doctor SUCKS and the 2 hour wait should not be reserved for scummy, dregs of the earth, dope fiends.  Trust me, although I will have 13 years clean on October 1st and I have changed ALOT of my old behaviors, I have NO PROBLEM speaking my mind.  So, unless he said to you that you have to wait the 2 hours because he believes that you are "one of us", please don't associate the two.

I have to REMIND my doctors that I am a recovering addict and I am PROUD to be one.  I am who I am and I deserve NO LESS than you.

I am sure there was no offense intended on your part, but as with any category of persons who are disciminated against for WHATEVER REASON by WHOEVER, the reception is all but pleasant.

Best to you all.

[eyehavegr8life]

Just wanna thank everyone for their commments, I really appreciated them. This is so far down on the post now I will respond later.  Positive thoughts your way, Annette

[ringeding]

thanks.....few things get me going like that attidude can....sadly it is an attitude still alive and well it seems, when i thought we had come so far from that, espeacially on a site where there are so many former drug users..it is basically the same thing as spitting in many of the faces here and viewing them as 'scummy, filthy, dirty, dispicable' etc. ....i am apalled!....and then the apology!!...well, obviously there was little thought to that as the word...SCUMMY drug users was used as well, in the apoligy instead of simply...'drug users'  .....hummm....guess the point was lost!

[cuteus]

yes, sadly still on the high horse.

[cuteus]

annette; which Sinai hospital is that?  I was going to go to see DR. Dieterich at Mt Sinai, Manhattan.  He was willing to extend Tx for me, although I have no major liver damage.  The Gi who started tx with  me, did not recommend waiting with mild damage and she did not push to tx.  She left it up to me to decide and she wrote the letter to my insurance to get it approved . The first GI told me not to worry until enzymes were off. If your gut tells you to suspect LA LA land drs, get a second opinion. I did and here I am, almost 48wks later, 52, clear at 24 wks and hoping to extend past 52 wks, if my bloodwork continues to be satisfactory.  
I want another Biopsy! my bx result was not nearly as detailed as yours! not descriptive of the sample but to say grade, stage and dx.  I am ticked.

ring:  I picked up on the same thing you did in the last thread, but you expressed yourself so well on stereotyping, that I presumed my view posted already.  TY for saving me the typing

[Dorothy and Toto]

I am also 53, 1a, stage 2, grade 0, and started with load of 2 mil.  (a year later just before treatment my load decreased to 1.2 mil).  My ast and alt were slightly elevated.

I finally made a decision to treat because of my age, good insurance, supportive family and my doctor said I was a good candidate.  He did not push me at all. Also thought I might have a better chance with little liver damage. .  I was very worried how the treatment would affect my very sensitive skin and my arthritis.  It has its ups and downs but I am very fortunate to be able to handle the sides.  For some reason my arthritis isn't as bad as it was before and there are prescription creams that work well for the irritated skin.

Like everyone says, a tough decision.  At least we have that luxury as many don't have the option, they have to treat.  I have never thought I had made the wrong decision and personally could not go another 3+ years wondering if????  Am on shot 16.

[TnHepGuy_]

I might also add to look at this recent study - <a href="http://www.hivandhepatitis.com/2004icr/ddw2004/docs/0521/052104_hcv_b.html">Treatment with Peginterferon Alfa-2b (PEG-Intron) Plus Ribavirin Is Cost-effective for Hepatitis C Patients with F1 Fibrosis</a>

They look at patients with mild F1 fibrosis - a level at which some docs will recommend only so-called 'watchful waiting'.

(from the study):

<i> - Antiviral treatment reduced the 20-year incidence of cirrhosis from 20% to 7.6% overall, to 9.7% for genotype 1 and to 1.8% for genotype 2/3.

- Antiviral treatment extended life expectancy by 2.3 years overall, 1.9 years for genotype 1 and 3.4 years for genotype 2/3.

- Quality-adjusted life expectancy benefits of treatment were 4.7 years overall, 3.9 years for genotype 1 and 6.8 years for genotype 2/3.

[Amerabrit]

Annette:  Some great information has been posted here for you, but I would like to add that I believe you may benefit from a consultation with a new doctor.  Unless of course you have other health issues that might be influencing your currrent Dr.'s advice?  If not, perhaps you could find an HCV specialtist who happens to be pro-treatment and then compare the information from both of them.
Best of luck with your decision.

Audrey:  on IV drug users..   Well said!

[donAlfonso]

I've been infected since '70.  Always had mildly elevated AST, ALT, but was stable, extremely active and strong (cyclist) til 1998, when a bx showed fibrosis/beginning cirrhosis.  Since then, my liver has steadily deteriorated, and in 2002 had prostatectomy, after which I became symptomatic, developed portal hypertension/bleeding varisces last fall, started Pegasys on January 2nd this year.  My doctor wanted to treat earlier, and I put it off because I didn't want to disrupt my life at first, grad school, new job, promotion, another new job. Then after prostatectomy decided I wanted a year to fully recover, then had a family vacation to Italy which had been planned for 2 years, etc, etc.  Of course, I now wish I had begun right after that surgery (which by the way, may be why I suddenly got worse).

I wouldn't presume to suggest what you should do, but would remind you that we never know what little surprises, like prostate cancer, life has in store for us, while we are waiting for the "right" time to begin treatment.  I am a little surprised by your doctor's recommendation, as I think the NIH recommends tx in nearly all cases these days, and statistics show that tx before liver damage is more likely to be successful.  Good luck, whatever you decide.

dA

[audreywald]

I have to laugh, what do drug users look like? I remember BEFORE I started using, what I thought IV drug users looked like. Kind of like vampires, I guess, skulking around in the middle of the night, beating up little old ladies for a dollar, selling their children for a fix ...

Never in a million years did I picture my own face. Until I was raped, and someone offered me some heroin. Seemed like a good idea at the time. No more turmoil. Who knew what it would cost me?

Anyway, that has been over for 18 years, my face is respectable as can be, even cops rarely look at me anymore, (one advantage of middle age) and sometimes old people approach me for help, I guess I look safe enough.

But I am NOT ashamed, I feel it is very important to let medical people know HOW I got hep C, how long I have been clean, how much help I received to get where I am today, and how much of a mess I was to have put a needle in my arm. These stereotypes have to be destroyed if we are to be treated fairly, if we are to get new livers if we need them, if we are to get state of the art tx for Hep or any other illness.

Debbiedo, ty for asking. I am healing, slowly but it seems as tho I am. My blood work is back to normal, the meds do not seem to have done permanent damage, I just wish my hair would start to grow again, or at least stop thinning. How about you?

Chevy, honey, I miss you.  How are you doing?

[DoubleDose]

My comments would follow TnHepGuy's to a major extent, tempered by the following:  If you have had NO extrahepatic issues, like athrritis, diabetes, debilitating fatigue, autoimmune problems, etc. then it may make sense to monitor very closely and see how the state-of-art tx guidelines change over the next two years.  Probably no new drugs, but maybe a much better understanding of how to get a type-1 to SVR with the greatest probability of success, and least tx problems.  I am concerned that newer, better drugs could still be a long, long way off, in spite of hype and news reports of new agents being tested.  BILN was going to be the instant cure, for a few weeks, until they found that it came with cardiac toxicities.  No telling what the other inhibitors will do, or not do, as well (much less the trials, and many phases of FDA testing that will take years, even if a drug does work!).  My gut says treat, using the most effective treatment available today, under the watchful eye of a highly experienced HepC doc with a long track record of producing SVR's in GT-1 patients; but at the same time I don't think waiting two years will be a drastic risk in your particular case.  The only caveat is:  there is no guarantee regarding progression time-line (it's not linear in many cases),and no guarantee the drugs will be any different in two years than today.  Your current QOL might help you with the decision.  Do insist on very regular liver function and general blood testing.
I would follow up with another biopsy in two years if you choose NOT to treat at that time.  If you do treat, the biopsy might be skipped....since you will be addressing the bigger issue, which is eradication.  Good luck with your decision.

[honey1616]

Annette, I'm thinking like Audrey and probably you would be fine for a few years.  However,, Tnhep has some very good points that you have to weigh.  I know with the time span that you have had this that its very possible it could start to work on your system more so but who really knows..And at 53,,,,I do know I have read,,,that your odds are down somewhat after 60 I believe on tx. If you knew for a fact,,,that there was something coming soon with less sides....I would want to wait but it could be 5 to 10 years and you may ultimately in 3 yrs be doing the same tx...we are.  I know this is something only you can decide and we are just here to point out ideas but one of my weighing decisions would be also....Is now a good time in your life?  Do you have something this year that you want to finish or conquer? If so...then maybe wait until next year and make a decision. Sorry I can't help more on this decision but I guess none of us really know how fast this disease could take off on one individual...I hate this!! Ugghhhh It can be so much of a catch 22...Good Luck!

[TnHepGuy_]

Congratulations on your results!

A few quick questions that come to mind for the all-knowing, all-seeing doctor:

- why is he not considering all the other extra-hepatic events (diabetes, rhumitoid, b-cell, etc.) and symptoms that are known to occur with chronic Hep C when telling you to wait?

- you've had Hep C for 20-25 years already - most docs mention that as the time-frame when they become concerned about progression onto advanced liver disease, cirrhosis and liver cancer. Isn't he?

- since he has no idea at what rate you may progress - at age 53, why wait until you're older and less able to tolerate tx - and have lowered odds as a result of being older? Especially given that you have two other negative predictors of SVR (geno 1, high viral load).

- since all of the future treatments for at least the next five + years (and most likely more) will involve interferon, and there are never any guarantees of a drug moving all the way through trial and then getting FDA approval - what exactly will you be waiting for?

- I failed mono tx in 1992 - and didn't begin tx until this year. My doc had me doing twice yearly LFT's ( w/ alpha feta protein - a tumor marker) and at least yearly (now twice) ultrasounds. Why wouldn't a hepatologist do at least that amount of monitoring? How often does he want you to be bx'ed?

- If you wanted to start tx regardless of his recommendation, would he support you in that?


It basically comes down to if you feel that trying to eradicate the virus at this point in time is worth the odds and potential sx's. The next probable addition to the current combo mix is Zadaxin, which will help boost the SVR odds - but is at least 2 years or more away from approval (assuming the FDA does approve it).

You've had very good results on your bx. But, as a personal example, so did I. My 2003 bx was basically the same as my 1992 (grade 1/ stage 1). Last year my alpha feta protein started to read out of the normal range. In Hep C patients without cancer, this can be a sign of fibrotic progression - and I've had Hep C for 20 years. I'm 45 and decided not to wait.


May God's blessings and mercy be upon you.


TnHepGuy

[audreywald]

This is not going to be a popular answer, but my opinion is that you should listen to your doctor. For many the sides are hell. You are in a position that you probably CAN safely wait, as long as you see your doctor regularly and have those tests as often as he says.

I say you PROBABLY can safely wait. There is no guarantee. There is also no guarantee that the drugs themselves will not do you serious damage. I am your age, I have mild to moderate damage (biopsy is not worse in the last 7 years) and I have tried the tx 3 times. It was so bad for me that my doc says probably I would be better off with a transplant if it came to that. (highly unlikely)

There are people who are in favor of tx no matter what. There are those who think no one should go on the meds come hell or high water.

The right answer for you is in between.